Living with fibromyalgia: An interview with filmmaker Daneen Akers

by Jenni Prokopy, the Editrix

When I sat down to watch "Living with Fibromyalgia: A Journey of Hope and Understanding," I wasn't sure what to expect. I've read more than my fair share of books and brochures on the condition (which I was diagnosed with 10 years ago) and probably browsed more than 100 web sites devoted to it. Most of these materials have boasted too-good-to-be-true cure-alls, offered pandering advice, or have just been total downers. I think we all know there's nothing like reading someone's story of woe to remind you of your own troubles.

So I was pleasantly surprised by the film directed by the husband-wife team of Daneen Akers and Stephen Eyer, which profiles an array of people living with fibromyalgia. They include:

Liana Gefter, a med student who works to balance her ambition with self-care;

Lauren Armistead, a volleyball player who (when she can) uses physical activity to diffuse her frustration with the disease;

Frances Jenkins, an actress on whom the 40th Anniversary Black Barbie was modeled, who clearly knows what it's like to live with "invisible" illness;

Randy Wold, the first man to share his experience with fibromyalgia I've ever encountered

and Lynne Matallana, founder and president of the National Fibromyalgia Association, who speaks candidly (along with her husband Richard) about the impact of fibromyalgia on their relationship and the work they've done to keep it strong in the face of such a massive challenge.

One of the most interesting interviews is with Darlene Akers, Daneen's mom, who was diagnosed with fibromyalgia in 2000. The emotion that comes through as the two women discuss the impact of the illness on Darlene's life—and on the family—is palpable.

The film debuted November 18, 2006, and will be shown in theaters and homes across the country the weekend of May 11-13 in observance of Fibromyalgia Awareness Day.

I recently spoke with Daneen to talk about the goals she has for the film, and the experience of including such a personal subject among those interviewed.

Wouldn't it be great if...

When Darlene was diagnosed with fibromyalgia in 2000, it put her family on a steep learning curve. "There are six of us in the immediate family, and by the time we all read a good book on the condition," explains Daneen, "we'd be lucky if it had been a year and we would all be on the same basic level of understanding." This coupled with the fact that online resources were about "50/50" in their reliability, and Daneen was wishing for a good, realiable resource.

Her husband Stephen, a documentary filmmaker, offered an intriguing idea: "Wouldn't it be great," he asked, "if there was something that everyone could sit down together and watch for an hour?" The idea, says Daneen, was that people could "watch someone's story with empathy, versus seeing someone who you're so close to. When you see someone you don't know, it can have a profound effect."

(In fact, she says that since releasing the movie, "Lots of people have told me, wow—I'm ashamed. My mom's been telling me for years that she had this, and I ignored it, and then I saw this person I didn't even know say the same thing and I believed them." Sound familiar?)

Digging deep, and making a movie

Daneen and Stephen sold their house and moved to a smaller space to help finance the film. It was a decision based on her desire "to do something that felt more worthwhile." The emotions entangled with the process were strong, shes says. "It was hard, because I'm an empathetic person, and I felt so much pain for how difficult it had been for (her interview subjects). The more we interviewed people, the more I started to feel such a huge responsibility for the film. They trusted us to tell their story and represent them in a dignified way."

The process also "put things in perspective for me about real challenges in life, and what it means to face those with grace," Daneen says.

The seven people interviewed for the film offer a variety of perspectives, each compelling in their own way. An athlete in her 20s, Lauren talks about feeling like she's in her 80s, and how her biggest challenge is emotional—that it can be hard to accept living with a disability, and lonely. Randy opens up about the challenge of maintaining solid relationships, especially when you feel physically, mentally—even sexually—limited, either by symptoms or by the medications meant to treat them. Lynne talks about the struggles she and husband Richard face, and how hard they work to keep their marriage strong. Experts weigh in on research and time-tested treatments.

Finding balance

Daneen says she and Stephen worked hard to achieve a balance between showing the reality of life with fibromyalgia, and turning the film into one long sob story.

"It had to have authenticity and truth, that it can totally suck, but also leave people with the idea that there is hope, and joy is possible."

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